Deteriorating from My Disease: One Young Woman’s Painful Life with Tarlov Cysts

Stacey lives with Tarlov Cysts, of which the incidence rate is unknown.

When doctors found three cysts growing on my spinal nerve roots, by my sacrum, they said not to worry as there was nothing they could do for them.  So, I thought nothing of them; yet, I was having very sharp sciatic pain that traveled down my legs.  Four neurosurgeons later, Dr. Kabins in las Vegas, NV stated my tailbone was severely shattered and I needed to have surgery.  I was scheduled for September 2008.  I spent five and one-half hours debating on whether or not this surgery would help, thinking I was going to be fine.

My pain and walking abilities became worse, so I decided to look back at my MRI from 2007.  I noticed it read Tarlov cysts, so I googled the term and found descriptions of similar symptoms I too was suffering from.  I requested another MRI and received my report two days later, which showed my cysts had grown from 15 mm to 20 mm (about 1 inch in size).

Since that time, I have learned these cysts erode your nerves and bone, and there are only three neurosurgeons in the United States that will do surgery to slow the progression of this disease. I had to file for SSI (Social Security Income) due to obvious reasons.

I feel like a prisoner in my own body.  I awake each morning with muscle weakness, shortness of breath and pain. At what seems like forever ago, I was a very outgoing person; now, I can only handle sitting for about five minutes, and I have intermittent periods of having to either stand or lay down. And where I used to be able to jump and run, I walk with a cane or arm crutches.

I recently learned from the Dr. Frank Feigenbaum from Dallas, TX, I would need two surgeries as my pelvic area is full of them. However, he is concerned about the Tarlov cysts around my sacrum bone as they have started to erode the bone away along with the nerves in my spine. The surgery will require four to five hours, a hospital stay of at least four days, and an extra eight days in Dallas as well as 18 months to heal due to the slow the progression of this disease.

I can no longer work, as I am just deteriorating.  So, in the meantime, I am eagerly waiting to get approved for SSDI and continue to have Hope.

Thanks for listening.

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  1. Stacy Turner says:

    I was just diagnosed with Tarlov cysts about 2 cm in size on my sacrum today. I have been in excruciating pain for over 3 months now and I’m scared that I’m going to end up in a wheelchair, or worse, in never-ending pain for the rest off my life. I live in NC now, but I am moving to IL where my daughters live. Neither of those places are anywhere near where the only 3 doctors in the country who specialize in their treatment are. I need advice. HELP!

  2. Alice says:

    Very good information.

  3. Alice says:

    Thanks for sharing.

  4. Dawn C. says:

    Can anyone tell me how large are your cysts? I just had an MRI for sever low back pain, hip pain, groin pain and leg weakness. My cyst is S2-S3 and is 1.5 cm. How much larger can they get? This pain is terrible, I havent found a doctor yet but I am near Cleveland Clinic. Any suggestions?

    1. pam says:

      I just recently had a MRI and my Tarlov cyst is 6 cm by 5.7 cm which is a lot larger than urs. Go To the Tarlov Cyst Foundation website to find out more and Best of luck! I feel ur pain!

  5. Annetta Timmerman says:

    They grow back. Dr Feinstein quit doing tarlov cysts. I’ve had 55 epiderals in 15 years. Really helps mabe 2 months as long as I do nothing. Have to live with it.

  6. Pamela J says:

    My last MRI, There are numerous peri neural root sleeve cysts in both the cervical and thoracic spine. There are bilateral root sleeve cysts beginning at the C4-5 level extending inferiorly to nearly all thoracic spine levels. Possible idiopathic intracranial hypertension.

    1. Stacey Ann Nelson says:

      Hi I’m still waiting for Medicare so I can get to Dallas for the surgery. I’m the person in the story they chose to post. Go to the tarlov cysts disease foundation. They can’t remove the cysts they drain and pack them they grow from spine fluid

  7. Tito says:

    Therapy does a good help, let try it and hope for the best

  8. Terry says:

    Hello everyone,
    I have been reading everyone’s messages, and was very surprised as to how many people have the same type of issues, and yet were told like I was, that there isn’t anything they they can see that is causing me the problems I have been experiencing..I have had a surgery in 2009 for a removal of a tarlov cysts in my lower back.. I have had issues with my lower back, and severe body aches and week body parts but was told that the cycts are not the cause of the problem, and I lifted something heavy..This was and continues to be the most stressful, painful thing I have ever experienced in my life.. Every time I have a CT or MRI done, I am told I have cysts all over every one of my organs.. I was going to a specialist in Baltimore, but the ride was over 3 to 3.5 hrs and to much pain to sit for that long.. He was the one who did the surgery..It is very unfortunate that there aren’t any Dr’s. in the area, that specialize in this area.. I am trying to find someone in my area that will believe me, and who has the experience to be able to help me somehow…

    1. Jen says:

      I too, have a tarlov cyst. It starts at L5 and goes to S5. I live in Baltimore and have seen Dr Long, Dr Kathuria, and Dr Welch in Philly. I have been fighting for surgery (long story) with Dr Welch for years. A diagnosis took 6 months after I was assaulted and have been in severe pain ever since 1.3.13. I’m at the end of my ropes and can’t continue living like this. The frustration is so extreme even when talking to friends and family about my problems. Doctors I see don’t understand the disease and treat me like I’m making things up. Glad I found this post. Gives me hope for the future. Keep going, just keep going.

  9. Lynda Rex says:

    Sorry to here of your other problems.
    I would 1st go to your family practice Dr.
    get a scrum MRI with & without contrast. I would then talk to your family practice Dr. as to which of the neurosurgeon’s that work on these
    could be your best option. Also consider which Dr. would be closest for you to work with. See this web site
    I would talk with all your Dr.’s for advice. Dr. Feigenbaum is learning from each patient like the others. I really hope the Dr.’s can find a cure
    soon. I can’t really say there is a cure as I have had 2 surgeries for 5 cysts in 10 years. I hope we all will be cured as these are very painful.
    Hope this helps.
    Lynda Rex

  10. Daryl Ann Gordon says:

    Time for surgery or not

    1. Daryl Ann Gordon says:

      Dr Fegenbaum good?

  11. michele long says:

    Hi, I am glad I came across this forum! First in 08 I battled cervical cancer,went thru chemo and radiation after that was over 15 months later the repercussions from the radiation took affect with my intestines and some of my organs as well as my spine. Low and behold I have had several surgeries of my intestines, my small intestines are 3 ft. Shorter and my terminal ilium is gone. No gall bladder or appendix. And I have osteoporosis that started at around 49 it’s more advanced than should be at my age. I have been having lower back pain for the past two years with no great relief. I’ve done the caudal injections that did not work,of course pain meds, excersise, message is like it ed because of my intestines. Here’s the kicker: this past hear, especially the past 6 months pain has become unbearable,I did get another mri done of my lower back not on my tailbone. That was a mistake that is where most of my pain is and it radiates out to hips. Walking more than 30 minutes is no longer done, same with sitting cleaning, any activity for that matter, I have pretty much retired because of this. I have been doing research because I’m feeling like the dr. Are going to be bouncing me around to figure this out. So I went through some of my first reports from 2012 and there it was on the mri findings s2 tarlov cyst 14mm. Not only that in several other mri’s following this for my intestines it was noted that fluid build up around lower back was present. It suggest possible spinal! I went onto research tarlov more and all the symptoms were there I couldn’t believe it! this nails it all my pain even symptoms that I have had that I didn’t think where associated but have been having too. Ok, so now what how is this tested,do I go to a spinal dr. Or a neurologist, and is there no cure

    1. Terry says:

      Hi Michele
      I started having severe pain in my lower back since I was 17..I went to every doctor you can think of..I went to a Neurologist, and was advised that looking at my MRI showed cysts but had nothing to do with my pain..I dealt with this for many years..I started not only having pain in my lower back, but in more places then can even begin to think about..I was advised that I have Tarlov cycts on every one of my organs..I was giving the name of a Neurologist in Maryland, who specializes in Tarlov cysts..After several times of seeing him, and doing MRI’s and other testing, he advised that he has done hundred’s of surgeries on people with the same problems I was having.. I had the surgery, and for at least a year had gotten relief..Unfortunately, the pain has returned, and with facing the problem of having the cysts on all of my organs, I just don’t think I am ready to go through this all over again, when I know the problem is just going to return, and the cysts on my organs are just going to get bigger and continue to press and have continues pain..The Doctor who did my surgery is Dr. Henderson..He works out of Bethesda Md. and the Drs. Hospital in Maryland.. He is a fantastic Doctor with so much compassion..I would recommend him to anyone who is serious about having there cysts removed.. I am now 58 years old, and have to just realize that this is just a continuation of what i have already been dealing with, and will just have to deal with it for the rest of my life…Good Luck to everyone, and hopefully someday they find a cure for this terrible disease…

  12. Janet Mitton says:

    I have a tarlov cyst on the bottom of my spine, a large android cyst runs from there to my sacro. I am in constant pain, have put on 2st with lack of movement, and i am so glad to find this site, i know now iam not alone ☺

  13. Usman Shamaki says:

    Hi, all. For about 3 years now I have been having lower back pains which i attributed to the stress of driving long hours to and from work. Initially, I would take painkillers and I would get some relief. About a month ago, the back pains got so bad, I had difficulty standing up from a lying position. I went to the hospital and had an MRI exam. A cyst was found on my S4. Two neurosurgeons studied it and told me it was nothing to worry about. That there was no neural deficit. They advised me to start physiotherapy and exercises. A third neurosurgeon studied my MRI and advised I should not have surgery for it yet as there were risks associated with spine surgery.
    I have started walking and jogging and physiotherapy. However, I noticed a tingling sensation in my legs which, based on what I’ve read about Tarlov cysts is an indication that the cyst is putting more pressure on the nerves in the spine.
    Any suggestions or advice on what I should do?

    1. Lynda Rex says:

      I have gone thru Physical Therapy but did it in a pool. Which was good because it does not put extra stress on the nerve. I think the more stress on the cyst/nerve the worst off you are. I have learned how to pace myself when doing cleaning/vacuuming (only 1 room at a time). Always remember to put ice on the lower back/buttocks area after a workout. I am in my 50’s & have had 2 surgery’s 9 yrs apart. I also know when a storm is coming about 2 hrs away as I get more pain/swelling in the legs, back, feet etc..I live in the Dallas area so I went to Dr. Feigenbaum. Good luck as we all need it until they find a cure.
      Feel free to contact me for moral support via this site.
      Lynda Rex

      1. Stacey Ann Nelson says:

        Hi I’m still waiting for Medicare so I can get to Dallas for the surgery. I’m the person in the story they chose to post.

  14. Lynda Rex says:

    Hi all!
    I have Had 1 S1 Cyst removed in 2004.
    Then in 2013 It was back but this time I had 4 cysts 1 each on S1, S2,
    S3 & S3. My 1st cyst happened when I was 40Yrs old. Now I’m older pain worse. Had my surgery in Dec 2013,
    With Dr. Feigenbaum in Dallas, TX.
    Had the 1yr in Dec. Knew cyst was back, but told no surgery now but see pain management Dr. Rameriz went thru 3 shots still having bad pain & symptoms they want me to use Boston Scientific pain system where they install leads in the spinal cord. I don’t want to mess with the spinal cord. Right now I feel that all of us with these cysts are still being studied and we will eventually have a cure. I have a couple of tips for everyone. 1.} For Headache try using a night guard from your dentist at night. I did this as I tend to bite down when in pain. This helps by keeping your jaw from cinching causing pain. 2.} For homemade ice packs use 1/4 cup rubbing alcohol with 3/4 cup water place in Ziploc baggie-Freeze.
    For your feet try using seal a meal, make in long slim size to the bottom of your feet & the top of you feet freeze. the easy way to keep these on your feet is to get some knee hi socks fold down the sock to form a sleve on your feet insert ice. Relax
    the burning stabbing painful feet. I sleep with ice on my feet. I have also made a ice slleve with Velcro to go around my waist that hold ice. Holds Ice in place very well. Hope you all the best.
    Lynda i

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